Small Victories

Yesterday we had a therapy appointment for Franklin.  We've been seeing this psychologist for several months now (we'll call her Dr. M) and she asked my husband and I yesterday how we thought things were going.  She said I seemed a lot less stressed. I told her I didn't feel less stressed and I thought that I could see little things starting to improve, but the big things still were not working for us.  I told her that I felt like the things that were causing us the most stress were not changing despite our best efforts to REALLY use the method she was teaching us to use.  Dr. M stopped me in the middle of my "complaining" and told me to take a pause.  She told me that she has seen huge improvements in the way that David and I interact with Franklin.  She told us that just listening to us in the waiting room before coming out to get us, she noticed that we're really working hard to try to help him problem solve and giving a voice to how he is feeling.   She said she really noticed how we were making sure to encourage him in the good things he was doing, which she said was a completely different scenario a few months ago.   Dr. M reminded David and I that even small progress is a victory and that it is important to focus on the positive changes instead of dwelling on the negative.  I guess when you're so used to things being difficult, or when change is so slow, it's really easy to dwell on what ISN'T working rather than on what is.  So Dr. M had us list all the things we thought were going well from our perspectives, and it really helped David and I see how things were changing for the positive.  We still have our struggles, of course, and things are changing slowly, but they ARE changing.  We just have to keep working at it, and we have to focus on what is going well, and we will get there.
Something else we discussed with Dr. M is the fact that I feel like I constantly need to explain Franklin's behavior to EVERYONE, whether it be people we know, or random people out in public.  It's hard when you have people in your life who don't believe that Autism is a real thing or don't really understand it.  My son is very high functioning, and a lot of his "Autistic" behavior manifests itself in what looks like "bad" behavior.  The difference is that my son isn't being hyperactive, defiant, or tantruming (is that even a word?) because he is not getting his way- he is doing it because his world is "literally" attacking him.  He doesn't hit because he's being a "brat," he does it because he wants your attention and he doesn't really know any other way to get it.  He doesn't scratch because he wants to hurt someone or himself, he does it because that provides him sensory stimulation that feels good to him.  So the way in which we deal with this behavior has to be different than the way in which you would deal with the behavior in a "neurotypical" child.  I cannot punish my son for these behaviors because of the reasoning behind them.   I feel like I am constantly having to explain these things to people because a lot of times I get, "but he needs to know it's not ok to do those things!"  Yes, he does need to know that those things are not ok to do because some of them hurt himself or others, however, instead of punishing, we need to teach him other behaviors to replace those that are not working.  We need to teach him the skills to deal with things in those situations, because trust me when I say that reward and punishment systems DO NOT work with Autistic children.  They just don't work.  Period.  Dr. M helped me realize that I don't owe anyone an explanation.  That I have the right to deal with my child in any way I see fit because I'm the mom and that's just how we do things. She made me realize that people are always going to judge or not understand why we do things, but it's not up to them, it's up to me! Hearing that really helped me, because I honestly think I am WAY too worried about what other people think when what I really need to do is focus on doing what is best for Franklin.  Anyway, there's my reflection for today.  I wish all of you dads out there a Happy Fathers' Day!!!

Sometimes funny stories aren't funny until later, but they're still funny...

So...yesterday was Franklin's last day of school.  He had a field day with the general ed. kindergarteners.  I was hesitant to let him participate with the general ed kids because, although I know it would be fun for him, I felt like it would be a very overstimulating situation from which he would have a hard time recovering.  His teacher and I discussed it and I agreed to let him go, and as I suspected Franklin spent the remainder of the day in a state of overstimulation.  Nevertheless, I promised Franklin we would go get frozen yogurt after I picked him up from school, so, we went to the frozen yogurt shop.   Franklin was so overstimulated that he couldn't even focus on which kind of yogurt he wanted or what toppings he wanted.  Finally, we were able to get through the line and sit down with our yogurt.  Franklin ate his yogurt and decided he wanted more so, instead of asking me for more, he got up, walked over to another table where a bunch of teenagers were sitting, sat down without saying anything and tried to stick his spoon into one of the teenager's bowls!  The group looked over at me, completely bewildered! I apologized and explained that Franklin was Autistic.  Again, they looked at me with that "deer in the headlights" type look, like "What's that mean?"
I am sharing this story for a couple of reasons.  The first is because this happens a lot.   My son tends to problem solve in very creative and interesting ways.  Sometimes I ask myself how my son comes to the solutions he finds.  In this case he wanted more frozen yogurt, and he decided to go get some!  Simple as that.  He gets things in his head and once they are there, he can only focus on what he wants.
One time, Franklin walked out of the house while I was feeding the baby and right into the neighbor's house while she was sleeping.  He walked right into her bedroom and started flipping light switches (Franklin LOVES to flip light switches).  We had never met the neighbors as we had just moved into our house.  At the time I was horrified and embarrassed, but after explaining to the neighbors that Franklin was Autistic and apologizing, they were very nice and understanding.  When I asked him why he decided to go into the neighbor's house, he said simply, "I wanted to see what their bedrooms looked like."  This wasn't a new behavior for Franklin, several months earlier (at our old house), while playing outside, he decided he was hungry and instead of coming into our house, he went into the neighbor's kitchen and got an apple out of her refrigerator.  We've had conversations about asking people for what he wants, but he doesn't understand.  It can be really embarrassing, and aggravating constantly having to explain my child's strange behavior but slowly I am learning to just accept that he is who he is.   I am learning to accept that people are always going to be judgmental, but the majority of people tend to be understanding, especially when you explain.  Franklin is who he is, and he is always going to be this way.  As his mother, if I don't accept that and him, who will?  So I am slowly becoming less self conscious about it, and just explain the situation and move on.  I've even started getting snarky with people who are rude or judgmental.  Of course, there are always situations that arise that frazzle me, or make it hard for me to keep my cool, but I am learning and I am trying to move forward and that is the best I can do.  In addition, regular discipline doesn't work with children like mine, so you have to teach them in a different way, and that can be frustrating sometimes.
What is interesting to me is that Autism is SO prevalent these days, and yet SO many people still don't know what it even is!  I fully admit that before  having my son, I had NO CLUE what Autism was.  I have a masters degree in Elementary Education and yet I had one quarter of special ed training with about a day of that being on Autism.  There is so much that is unknown about Autism and yet families like mine are expected to navigate it virtually blind.  The lack of resources for Autism is a very long post for another time, but it's a huge issue.    And when things don't go smoothly, or when our children do strange things, people tend to judge.  What everyone needs to understand is that we, as Autism parents, are doing the very best we can with the very limited resources we have.
My point in writing this post was to share that a lot of times, the things my son does don't seem funny at the time, but I can see the humor in them later on.  I feel like I need to just take care of him, and work on not getting as frazzled.  I need to quit worrying so much what other people think because he's more important than anyone.  Enough said.

The Dos and Don'ts of Supporting Autism Parents

Living with an Autistic child is HARD.  That’s the truth and there’s no way to really sugarcoat it.  It’s just hard.  Period. It’s one of the most difficult things I have had to deal with in my life.   Lots of well-intentioned people try to offer help and support, but the truth is, you cannot begin to imagine what Autistic parents go through unless you actually live it every single day of your life.  I would like to share with you what is, in my opinion, the Dos and Don’ts of supporting Autism Parents.  (note- this post was written after interviewing several Autism parents).

• ·      DON’T be offended by declined invitations but DO Keep inviting-   Autistic children are very routine oriented and have sensory processing issues.  An activity that might be fun for a neurotypical child may not be very fun for an Autistic child.  Certain activities can cause sensory overload, which can lead to hyperactivity and meltdowns.  What does sensory overload mean exactly? Imagine that you were trying to talk to someone while someone else was screaming in your ear and another person was flashing his hand in front of your face.  You would get pretty upset and annoyed.  That’s what it is like for a person with Autism in certain situations.   In addition, because most children with Autism are so dependent on routine and familiarity, any changes can cause overstimulation and meltdowns.  My son does not do well with any sort of routine changes, and taking him out in public is very difficult.   We cannot do things at very certain times of the day, and we cannot go certain places due to overstimulation.  In addition, sometimes we have to cancel plans at the last minute because my son might not be having a good day.  I know that it might be hard to understand but a declined invitation has nothing to do with you, or how we feel about you.  It has everything to do with our child and how much he or she can handle.  DO keep inviting us to things though, because there may be a time when we can go.  Autism parents need social interactions even more than others and we still like to feel included so please don’t count us out, even if we do have to decline. 
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• ·      Don’t be offended by gift lists – Every year for my son’s birthday and for Christmas I send out a list of “appropriate” gifts (we have two children, N is our younger son, but I don’t send out a list for him because he’s not Autistic).  This list is comprised of things that my son said he would like to have, or things that my husband and I feel would be appropriate for him.  It never fails, every time I send out one of these lists, I get a comment from a certain family member about how we should be grateful people care enough about our kids to get them gifts and every year I have to explain our reasoning to this family member.  These lists are not to be greedy or demanding.  Many children with Autism have trouble with flexibility and again, overstimulation.  An Autistic child may want something and have a hard time accepting if he doesn’t receive that gift, and may also have a hard time understanding WHY he did not receive that gift.  Also, and more importantly, certain gifts cause strange reactions in my son.  He feels things very deeply and in ways many of us cannot understand.  We do not like people to buy books for him, for example, because certain books may cause him to become very anxious and upset.  My husband and I, as our son's parents, know what is going to cause a reaction and what isn’t.  If you receive a gift list, PLEASE stick to the list, and if you have an idea for a different gift ALWAYS ask the parents first.  Autism parents HATE having to take gifts away because they cause adverse reactions in our children, and it never fails, every year we have a relative who gets something that is not on the list, doesn’t check with us first, and it is something that we have to take away because it causes a meltdown. 
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• ·      Don’t give my kid candy without asking me first - Some Autism parents are very strict about diet, others are not so strict.  It is VERY important to ALWAYS ask the parents before you give the child anything to eat, especially things like candy.  In my house, we are very clean eaters.  We don’t eat a lot of processed foods and I read labels religiously.  I have found that a lot of processed sugar and chemicals in our foods, namely Red 40 and High Fructose Corn Syrup, cause my son’s behavior and meltdowns to become extreme.   I won’t even let my son have a Popsicle at his end of the year school party because of the HFCS and Red 40 in most popsicles.   I cannot tell you how many times I have had someone say to me, “let him have it! What’s the harm?”  to which I reply, “you want to give it to him? Then you can take him home afterwards.”  That doesn’t mean that I NEVER let my child have treats, because I do.  When I give him a treat, I either make it myself, or make sure the ingredients are natural.  My point is, ALWAYS ask the parents, and more importantly ask when the child IS NOT IN EARSHOT!  Another thing about Autistic children is that when they see something they want, they will not let it go and THAT can cause a worse meltdown than the candy itself!
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• ·      Don’t make suggestions to me about how to deal with my child’s behavior or give me unsolicited advice (“have you tried…”) - Many well-intentioned people feel the need to give me unsolicited advice on how to deal with my child’s behavior, or they say “oh every kid does that.”  Ok so every kid may do “that” but here’s the difference- there is a vastly different reason WHY my kid is doing something compared to your normally developing child.  My child is having a tantrum because he is over-stimulated, he had a change that was not expected, or he is having a sensory overload.  Reward and punishment discipline is not going to work with my child because the WHY behind what he is doing is vastly different than the WHY behind why your child might be acting out.  My son isn’t acting out because he is being bad; he is acting out because something in his environment is “attacking” him. The biggest piece of unsolicited advice I get is to use sticker charts.  That is a reward system.  Yes I have tried it, and NO of course it didn’t work.  WHY? Because my son isn’t motivated by ANYTHING, not even the things he loves. My son, and many other Autistic children, are instant gratification type kids. They cannot think beyond what they want in that moment, or how they are feeling in that moment.    In addition, one of my biggest pet peeves is when special education teachers offer me advice.  I am a certified teacher, so I know about kids, however, we as parents know our kids the best.  Special education teachers may have experience with Autistic children, and they may know strategies to help them succeed in school, however they don’t know what it is like to live with an Autistic children EVERY SINGLE DAY.  They do not know unless they have one of their own.  My son is a perfect angel at school and his teacher gets to send him home at the end of the day.  So, please, if you are a special education teacher, or you are a person who doesn’t have an Autistic child living in your home or your family, please keep your suggestions and advice to yourself.  DO, however, research Autism.  DO ask questions of the parents. DO ask if you can share some information that you have found interesting (and don’t be offended if the parent declines).  I am perfectly happy to answer any questions people may have about Autism, so please!  Ask away! 
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• ·      If you want to help a struggling parent, don’t try to intervene with the child, always ask the parent how you can help- my son melts down in public, A LOT.  He also gets very over-stimulated and tends to bolt and hide, or wander.  More often than not, well-intentioned people will try to help me by intervening with my son.  They will try to talk to him in order to distract him and redirect.  That might work with a normally developing child, however it will not work with an Autistic child.  The reason why is because when an Autistic child is melting down or on sensory overload, his frontal lobe shuts down and he literally cannot hear anything you say.  Think of it as if you are at a loud rock concert and someone is trying to talk to you from ten rows away- you wouldn’t be able to hear that person.  That is what it is like for a person with Autism.  In addition to not being able to hear you, the child will not be able to focus on anything other than what he or she wants at the time, which may very well be getting away from what is causing the discomfort.  Even if you are a special education teacher and you THINK you know what you are doing, don’t EVER intervene with the child.  DO, however, offer some practical help to the parent that is relevant to the situation.  Don’t ask what you can do to help because the parent, in that moment, has one focus and that is keeping his or her child safe.  Offer to do something concrete (loading groceries into the car, for example) to help. 
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• ·      Don’t say things like- “Oh but he looks normal” or “Oh, but he’s so smart!” or “but he’s talking!” – People say these things to try to put an Autism parent’s mind at ease about his or her child’s current behavior.  People also say this meaning to let us know that our child’s behavior is not bothering him or her.  It’s something that people say with good intentions but it is actually a huge insult to an Autism parent.  The reason that saying these types of things are an insult is because our children look like everyone else.  When I have someone tell me that my son doesn’t “look” Autistic or that he “looks” normal, I often reply, “Well, how is he supposed to look in your opinion?”  Making a comment about a child being “smart” or a child’s ability to speak is insulting because it suggests that people with Autism can never speak, and that they are not smart.  Autism is a spectrum disorder.   That means that people with Autism can have low IQs with intellectual disability all the way up to very high IQs with no intellectual disability.  My son’s IQ was tested recently and came out in the high 150s, so he is highly intelligent.  Many people with Autism happen to be highly intelligent, even if they are non- verbal.  In fact, many of the most intelligent and creative people in this world are Autistic! Many of them are engineers, scientists, inventors, and even actors!   Have you heard of Dan Aykroyd?  Yep, he’s Autistic!  Daryl Hannah?  So is she!

• ·      Last but not least- when I am having a hard day don’t tell me what a blessing my child is- This is one of the major pet peeves of lots of Autism parents.  We know our children are blessings.  We love them unconditionally just like everyone else.  I cannot tell you how many times I have just needed to vent, needed someone to listen to me, and had a person tell me that my child can’t help it and he’s such a blessing.  The reason this bothers so many Autism parents, including myself, is because it is dismissive of our feelings.  It is basically saying that we do not have the right to feel the way we feel in that moment.  It says, “just suck it up and move on.”  When I am having a hard day with my son, and it’s REALLY bad, I just want someone to listen to me.  I need to be able to cry, to feel, to grieve, to be angry, to feel whatever I need to feel in that moment so I CAN move on.  Life with an Autistic child is VERY stressful and I cannot even begin to tell you how much.  When I am having a hard day, I don’t want to hear what a blessing my child is, I want someone to just let me vent.  It is so easy to feel alone and completely isolated when you are an Autism parent, like nobody understands.  Statements like “take a deep breath and know your child is a gift from God,” only serve to make me feel more alone.  I know my child is a gift from God, I know he is special and a blessing, but in the moment that I am completely overwhelmed with how much Autism sucks, I don’t want to hear dismissive comments about how my child is a blessing.  I want support, I want someone to listen, and I want someone to be able to listen to me cry.  You don’t have to say anything, just let me vent.  I just need a friend in those moments, a sympathetic ear. 

So there you have it, if you are an Autism parent, and you have something to add, please comment!  I would love to hear some of the other ways in which people can support us!  Please pass this along.  The more awareness we can raise, the more our families and our kids will be understood.  And please, don’t hesitate to ask me questions, I am happy to answer them!

You Are Not Alone

Hello Friends!

My name is Elizabeth and I have started this blog to share my family's journey with Autism.  My son "Franklin" (using an alias after his favorite storybook character) is 5 (almost 6) and has been diagnosed with high functioning Autism.  My goal with this blog is to share my story, to provide an honest look at life with an Autistic child and in doing that, help others.  I want to bring awareness to those who do not know about Autism, but I also want to let other Autism parents know that they are not alone.  When you have an Autistic child, it's so easy to become an island, to feel totally alone in this world.  I am here to tell you that you are not alone, and that there are many others out there just like us!

So let me start by telling you our story...
Franklin is 5, almost 6 actually.  He was born premature at 33 weeks, and from the get-go we knew something just wasn’t right.  He was a cranky baby, never seemed to be happy with anything.  He always cried.  Because of his prematurity, we were able to tap into the Early Access services, which he had from about 3 months old.  At 19 months he was diagnosed with Sensory Processing Disorder, and at almost 3 he was diagnosed with PDD-NOS, which is a high functioning form of Autism.  So there’s our history in a nutshell.  A little over a year ago my husband was offered a job at Energy Northwest and so we moved from Cedar Rapids, Iowa to the TriCities, WA.  We thought the move was the best choice for our family for many reasons.  It meant a pay raise for my husband, and moving closer to my family who lives in the Seattle area (which is where I was born and raised).  We had excellent services for Franklin in Iowa, we were on the Ill and Handicapped waiver, we had respite, ABA therapy, speech, and OT all covered under the waiver. I had help, I had time to take care of myself, I had opportunities to breathe.  I figured we’d have the same services in Washington, so we decided to take the plunge and move.  Just before moving, I also found out I was pregnant with my younger son N.  We ended up moving to the TriCities in January of last year.  As soon as we were here, I looked for a preschool for Franklin and applied for state services.  That is where the nightmare began.   In Iowa, the public school system had an AMAZING inclusive preschool program.  It was 4 days a week for regular ed kids, and kids on an IEP got a 5^th day for just special ed.  He also got his ABA and speech right at school!  When we moved here, I enrolled him in the ECAEP program and found out that it was not designed primarily with special education students in mind.  Franklin was forgotten at school, mistreated, and ignored.  I pulled him out of school about 3 weeks before the end because as we started pushing potty training, they refused to take him to the bathroom.  Franklin is prone to wandering so we needed a para to go with him, and they refused.  As a result, he was peeing his pants at school and they were just leaving him in it.  To make matters worse, about the same time we were flat out denied for DDA services because we were told that Washington State does not recognize a diagnosis of PDD-NOS and that we needed the report to say “Autism Spectrum Disorder.”  The psychologist who diagnosed Franklin at the University of Iowa refused to change the wording, and I was so overwhelmed with pregnancy complications and moving that I let it go. Meanwhile, we saw a steady decline and regression from all the progress Franklin had made in Iowa.  Noah was born in late June and Franklin continued to decline, his behavior went from “uncooperative” and “hyperactive” to downright defiant and aggressive.  Having a newborn and lack of sleep meant that I just didn’t have the energy to give Franklin the attention he so desperately desired. We hired a nanny, but that got very expensive and when she couldn’t handle Franklin’s behavior and energy anymore, she quit.  In September Franklin started school at White Bluffs Elementary in the structured classroom.  He did very well at school but his behavior at home continued to get worse.  With my husband working crazy, long hours, and me at home with an infant and Franklin getting steadily worse, I plunged into a deep postpartum depression.  I couldn’t even leave my house.  I was exhausted and I felt helpless.  I felt like nobody would listen to me, like his teacher would not believe me because he was so good at school.  I was desperate for help.  Franklin developed a “tic” which we later learned was “stimming” behavior. After Christmas I finally got myself help with my depression so that I could better deal with Franklin.  So here we are, June.  Franklin’s almost done with kindergarten and N still wakes up several times a night.  I find myself dreading summer.  I still don’t feel like I have the energy to deal with Franklin’s unpredictable and erratic behavior.  I am exhausted and I am still in a very negative place about his Autism.  We just had him re-diagnosed so AT LEAST we can get some state services and we have him in new therapy and participating in a study at Seattle Children’s, so there is progress to be made, but I still can’t help but feel stuck.  I feel like most days I am just surviving my life and surviving my son, when I really want to live and enjoy each and every moment.  I know there will come a day in the future when I will look back and wish that I could have enjoyed Franklin more, and as I write this there are tears running down my face.  I am desperate to leave this survival mode, but I feel like we are stuck here with no way out.  Most days I feel like I am suffocating and cannot breathe.  I feel sad when I see people out in public with their families, enjoying time together.  I feel like I cannot even take my child in public because it’s such an ordeal.  I cannot go to playdates with him because he is aggressive with other children.  I cannot tell you how many parents have refused to let their children play with Franklin.  It’s heartbreaking.  So I feel alone, isolated, and very lonely.  I feel like there is nobody out there who understands my life or really “gets” it.   These are the things that many Autism parents are afraid to admit.  These are the things that are my truth.  Yes, there are many, MANY things in my life for which I am grateful but I feel like I cannot focus on those things right now because my life is so consumed with this emotionally exhausting and energy draining thing called Autism.    I am tired of everything always being about Franklin all the time.  I am sorry if that sounds selfish but I would love nothing more than to have some time to visit with other adults or have time to myself and not constantly worry about Franklin or what Franklin is doing.  I would LOVE to set up time for play dates, or go to the park without having to worry about Franklin being aggressive with other children or bolting and having to run after him with a baby in my arms.  I would love to be able to get through the grocery shopping or run errands without having to worry about what I am going to do with Franklin or how I am going to keep him from pulling things off store shelves or running away from me.    I am trying hard to find a path to that hope for Franklin and for our family but it is slow going.  What I need is help.  What I need is room to breathe.  What I need more than anything is to get the reality of living with a child with Autsim out there for all to see.   
Through all these feelings though, I also think about what it must be like for Franklin, and then I feel guilty for how I feel.  Imagine if it is this hard for me, what it must be like for him to live with this each and every day!  To constantly feel like your world is attacking you must be unbearable.  The reality is though, that we all need to feel how we feel so we can deal with those feelings productively.  Autism parents need support, love, and understanding, just like people with Autism need support.  
I have found that it is really important to connect with other Autism parents.  I've found an amazing group in my area of Autism families and it's so refreshing to find those who truly "get it."  Not only do the parents get support, but the kids are able to get together and socialize without the fear of other parents judging.  This group has been a lifesaver for my family.  It was started by a mom just like me, who just  needed to feel connected.
So, please, don't feel alone.  Know that there are many of us out there who feel and experience the same things you do...reach out!  Contact me!  I am happy to talk!